Once Upon A Gene

As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time - I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bonded, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong.

Society & Culture
Kids & Family
Parenting
101
Effisode - Inclusion Revolution
2 min
102
Rare Disease Families Have Plenty of Hope - Wha...
38 min
103
Together We Can Cure Single-Gene Disorders Star...
42 min
104
Effisode - Montana or Bust
3 min
105
Rare Disease Siblings, The Glass House Children...
41 min
106
A Rare Collection - Easier Said Than Done
16 min
107
Effisode - The Lunchboxes
2 min
108
When Your Career and Personal Life Collide - VP...
34 min
109
Ensuring that the Patient and Caregiver Voice a...
29 min
110
Effisode - CTNNB1 Awareness Day - Rare Disease ...
3 min
111
Summer Surfing - Get On Top of the IEP Wave - T...
49 min
112
A Rare Collection - I Will Never Forget
16 min
113
Effisode - Back on Track - All Aboard the Inclu...
5 min
114
Half of the Day She's a Diversity Champion, the...
35 min
115
A Rare Mama Bear - Being a Single Parent and Ad...
27 min
116
Effisode - Global Genes RARE Disease Patient Ad...
5 min
117
Picking the Brain of a Rare Disease Dad - With ...
27 min
118
A Rare Collection - Remember Who You Are
24 min
119
Effisode - Find Your Fairy Godmother
5 min
120
Episode 138 - When Your Child is Facing the Mos...
36 min
121
Advancing Therapies for Rare Liver Diseases and...
31 min
122
Effisode - Guilt - Ain't Nobody Got Time for That
3 min
123
The Value of Intensive Therapy for Kids with Di...
35 min
124
A Rare Collection - Up At Night
25 min
125
Effisode - RARE Entrepreneur Bootcamp Warriors
4 min